Heidi-May's struggle is aired to the world

GRACE MILLIMACI

June 26, 2017

Little Heidi-May waits patiently before the tears start to roll down her face as her parents work quickly but tenderly to adjust a tracheostomy valve in her throat.

Within seconds her smile returns but Belinda and Shane Honess know it’s a good day — because there are times when their 23-month-old girl simply cannot muster any more courage or patience for the daily procedure helping her breathe.

It took 15 months and countless trips to GPs and hospital emergency departments before the Baldivis family’s concern about their child was recognised in a diagnosis of micrognathia, which prevents Heidi-May’s lower jaw from growing.

They have been told she is the only person in Australia with the condition.

She needs round-the-clock care and more surgery to correct her jaw and give her a chance at a “normal” life, which is taking a financial and mental toll on her exhausted parents.

It is a self-funded burden but the Honess family, who also have an eight-month-old daughter, have little choice because Heidi-May is not recognised as having a disability.

“The Government doesn’t see her as having a disability because she doesn’t fit in the box and because she can still do things for herself, except for breathe — she needs us,” Mrs Honess said.

They hope to change the system and help other families.

Heidi-May’s condition affects her airways, eyesight and development and she will need major surgery that will mean wiring shut her jaw for six months.

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